Hello out there. I’m not sure of forum etiquette so forgive me if I’m doing stuff wrong & please do correct me!
so, I was diagnosed with PPMS in August last year after approx 15 months of investigations, scans & odd symptoms that had me feeling like a complete hypochondriac.
The general neuro consultant who gave me the diagnosis discussed a raft of referrals he was making & off I went to wait for appointment letters. And I waited & waited & waited - but received nothing - not even the usual copy of the repost sent routinely to GP. Chased it with the dept admin & was told to “be patient”
Turned out some admin error led to no action or referrals being done for months & I just got fobbed off over & over. Only got sorted when I reluctantly complained to the trusts PALS service.
So - I now have a first appointment with the MS team on 24/2/20. I’m hoping it will result in some treatment and advice, and an intro to the MS nurses team as ppl say they are the best ppl to talk to about your ongoing symptoms/issues.
I’m waffling - but basically am wondering if anyone has any advice or suggestions of things to ask the consultant and/or team during a 1st appointment that would be useful to know - having waited so long to see the MS specialists I want to make the most of it.
Thank you! 😊
Hi everyone
Very new to all of this but thought I'd reach out. I've just been diagnosed with RRMS a few weeks ago, and given the Covid situation everything (apart from MRIs!) has been over the phone. So it's all been a bit surreal..
I've had unexplained spells of dizziness and fatigue over the years, but the incident that has led to diagnosis was (I'm told) a pretty severe relapse which Drs initially thought was a stroke. I had awful dizziness and fatigue, and then lost strength, balance and coordination on my left side. Thankfully I'm feeling much better now but the last couple of months have been terrifying. I guess I just want to say hi and speak to others with similar experience- my husband has been very supportive but with the lockdown I'm feeling quite anxious about everything.
Hi everyone. I had a confirmed diagnosis of rrmson 16/12/19 i am 35 years old and i had my first relapse at 16/17 years old. February 2019 i suffered from optic neuritis which lead to mri and my diagnosis. I know we are all different but can any of u tell me your story of relapses after diagnosis and how often etc. Thank you x
Hi
Thought I'd come here for a bit of advice
I am 49 female and for the last few days have been experiencing numbness in my face - like when a dentist does a filling. My tongue and gums are also numb
I have had numbness in the hands for years, possibly due to a compressed nerve in my neck (diagnosed as tennis elbow, then spondylosis via mri, my feet also tingle with strange feelings in my knees
I don't have any pain anywhere apart from occasional lower lumber and mid back pain.
I don't have any double vision, slurred speech.
I walk a lot and keep relatively fit
I've done some research hence being here. I know that it generally affects younger people, but can arise in my age group.
I've read that if the problem is MS that it could take months/ years to get a proper diagnosis and that there isn't much treatment available.
Early next year I will be 50 and I am planning a massive long-awaited holiday to America and Canada, however, I am fully aware that if I go to the Drs and they refer me to a neurologist I then can't get travel insurance due to having an 'undiagnosed condition'
I've looked at the medicines available and they seem to prevent flare-ups by 30-50% but most of the treatment is physio, exercise, cognitive therapy etc (self managed)
I don't know if I have MS, but if I go to the DRs and get a referral - then my 50th birthday gift won't happen
Any advice - have I read the treatments wrong - is there a point going to the Drs at this point - how long do referrals take
Thanks for your help
How do I get about getting a diagnosis when since the 80's and several house moves I have been unable to have any referral for further tests.
Back in the mid 80's my GP told me he suspected I had MS only the Neurologist I was referred to just duplicated the basic tests that the GP had already done.
When I asked for a referral for further investigations he told me that all my symptoms were due to anxiety.
30 years down the line I am no nearer to finding out what is wrong with me despite my midwife during one labour in 1983 said that MS had been put on my notes to inform staff on other shifts that they needed to be aware of my Multiple Sclerosis as it was already causing difficulties.
I asked about this when seeing GPs further down the line and they said they knew nothing about this.
My P.I.P. application was turned down due to lack of evidence so how do I get this?
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